I met Nick and his grandmother Kathy Mitton shortly after Christmas. They were at the hospital checking out the chair for the first time. They were both pretty excited.

That’s Matt Parks taking their picture above. He’s Director of Philanthropy, Annual and Special Giving at BBCH. “I worked with them to find a supplier and they did all the hard work,” he told me. “Nick obviously benefitted from the care here. Instead of just getting on with his life he wanted to do something to pay it forward to the kids a bit younger than he is. I think it’s a really nice story.”

Nick has been in and out of the hospital throughout his entire short life, beginning with the moment he entered this world. “He weighed one pound and was 10 3/4 inches long,” says his mother Tracy. “He spent six months at MMC in the Neonatal Intensive Care Unit (NICU). Many complications along the way but excellent care by the hospital team. We are very thankful.”

Nick was born with Hirschsprung’s Disease. His intestines were missing some important nerve cells. When our bodies digest food, muscles in the intestines move the food along. The process is called peristalsis. The muscles need nerve cells to work. When they’re missing, food doesn’t move along and the bowel can get obstructed. When that happens, an infection can develop and eventually, it could lead to a hole in the bowel and a worse infection.

Symptoms of Hirschsprung’s Disease

Hirschsprung’s occurs in one of out of every 5000 live births, mostly in boys. The symptoms usually show up in the first few days of life. The most common are:

No bowel movement in the first 48 hours of life

Gradual obvious swelling of the abdomen

Gradual onset of swelling

Fever

If only a short segment of the intestine doesn’t have normal nerve cells, it can be several months or even years before there are symptoms. They can include:

An overwhelming infection (sepsis)

Constipation that gets worse over time

Small, watery stools

Loss of appetite

Delayed growth

Nick has had a feeding tube since birth. Even after he had surgery at the age of 5 1/2 to remove part of his intestine. “I’ve had the tube since I was born because I wasn’t eating. I still have it today, but I haven’t had to use it lately because I’ve been eating by mouth more. I enjoy eating now.”

Back in the hospital — again

In 2014, when he still relied on the feeding tube for his nutrition, it needed to be replaced. He had the surgery at Maine Medical Center and recuperated at BBCH. That’s when his grandmother suggested the idea of raising money for the chair.

“He was very uncomfortable,” Kathy says. “I asked the nurse if they had any small recliners and they didn’t. So I talked to Nick and said what do you think about trying to find a way to get some small recliners here? He answered, ‘Great idea Nana. How do we do it?”‘

That Halloween Nick and his friend Erik Decker went trick or treating. Only, they asked neighbors for donations instead of candy. Nick called his grandmother the next day. “He said, ‘Nana, are you sitting down? I think you should. I went out last night for the first time and got $176.’ People were taking coins and dumping them into the bag,” says Kathy. “We’ve had pennies to nickels to ones to the last donation of $1200, which was very generous.”

Nick says he couldn’t have raised a dime without his Nana’s help. “She helped me set this up,” he says, “and now we’re here and we actually did it.”

When he saw the chair for the first time, he carefully inspected every inch, then sat down and leaned back. With a big smile on his face, he said, “I think it’s good. It’s comfortable.”

[Tweet “Make a difference for someone else”]

And like the savvy fundraiser I think he may have been born to be, he added that everyone should try to do something nice for someone else. “To make them happy,” he said. “They can also make a difference. Doing something nice makes the world better.”

What will Nick do next? Well, this spring he’ll be back in the hospital for what he hopes will be his last surgery — to remove his feeding tube once and for all. He can eat fine without it now and likes just about everything. By the way, his mom sent me the above picture. I had to use it!

Nick says he’ll also continue to raise money for a few more chairs. Good news says Julie Willwerth, the administrator for BBCH. “The kids fight over the chair,” she says. “We’d love three more. Absolutely.”

Any interest in helping him out? The best way to reach Nick or his grandmother is to contact Matt Parks or let me know and I’ll pass it along.

About Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. She now hosts and produces the Catching Health podcast and writes the award-winning blog Catching Health with Diane Atwood.
View all posts by Diane Atwood →

Post navigation

Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. She now hosts and produces the Catching Health podcast and writes the award-winning blog Catching Health with Diane Atwood.